Understanding Clubfoot in Uganda: A rapid ethnographic study
J. Konde-Lule,1 S.Neema,2 S. Gitta,1 T.McElroy,3.
1Makerere University Institute of Public Health
2Makerere University, Department of Sociology
3Curtin University
September 26, 2005.
Executive Summary: 4
Introduction: 10
The Ugandan Context: 10
The Uganda Sustainable Clubfoot Care Project (USCCP): 11
What is Clubfoot? 11
Ponseti Method of Correction: 12
Outcomes and Cost-benefit: 13
Goals and Objectives of this study: 13
Research Design and Methods… 15
The setting: 15
The Sample: 15
Recruitment Procedures: 16
Methods: 17
Focus Groups 19
Interviews: 19
Observation/Participant observation: 20
The conceptual framework 20
Data analysis: 20
Quality criteria addressed 21
Ethical considerations addressed 21
Analysis of Findings: 23
Objective I: Defining local terminology for this congenital condition. 23
Introduction: 23
Literature Review: 23
Review of findings: 23
Conclusions 28
Objective II: Investigating the local explanatory models or theories of causation. 29
Introduction: 29
Literature Search: 29
Review of findings: 30
Conclusion 40
Objective III: Exploring appropriate methods of knowledge dissemination in the local cultures 41
Introduction: 41
Literature Review: 41
Review of findings: 41
Conclusion: 46
Objective IV: Current treatment-seeking behaviour in Uganda and the factors that influence this behaviour 47
Introduction: 47
Literature review 47
Review of findings 48
Conclusion: 67
Objective V: Gender issues in Uganda and their impact on treatment-seeking behaviour. 68
Introduction: 68
Literature Review: 68
Review of findings: 70
Conclusion: 91
Objective VI: Barriers to adherence 92
Introduction: 92
Literature review: 92
Review of findings: 93
Conclusion: 104
Discussion of Emerging Themes: 105
Possible Outcomes from this study: 107
Recommendations: 108
References: 111
Appendix: 115
Informed Consent Form: 115
Interview with traditional healers: 117
Interview with practitioners treating clubfoot: 119
Interview with parents of children with clubfoot: 121
Interview with community leaders: 124
Focus Group with Community Members: 127
Executive Summary:
Introduction:
This rapid ethnographic study was designed to study knowledge, attitudes, beliefs, and practices across different regions in Uganda. It is the first phase of the Uganda Sustainable Clubfoot Care Project (USCCP) and will serve to inform the subsequent phases of the project. USCCP endeavors to implement a culturally appropriate and relevant awareness and treatment program for clubfoot, therefore it is vital to have an in-depth understanding of how people view this condition.
Objectives:
· To define local terminology for this congenital condition.
· To investigate the local explanatory models or theories of causation.
· To outline appropriate methods of knowledge dissemination in the local cultures
· To identify current treatment-seeking behaviour or lack thereof and the factors that influence this behaviour.
· To explore gender differences in treatment-seeking behaviour and underlying reasons for this difference.
· To describe potential barriers to adherence in treatment so that an effective and culturally appropriate approach may be implemented.
Methods:
This study was conducted in 8 districts of Uganda (Kampala, Masaka, Ntungamo, Mbarara, Mukono, Mbale, Iganga, and Tororo) using qualitative methodology. It was a cross-sectional, descriptive study employing: 48 focus group discussions, 156 interviews and participant observation.
Key findings and recommendations:
I: Defining local terminology for this congenital condition:
· Across all ethnic groups, there is no single local term for what biomedicine describes as clubfoot.
· Multiple terms were discovered which can be categorized under the following themes:
o Lameness or crippled (i.e. general term for disabled)
o Congenital condition (i.e. a deformity present at birth)
o Descriptive Terms (i.e. turned, twisted, spoon-like)
o Bowlegs
o Polio
o Deformed/Abnormal (i.e. derogatory/stigmatizing terms)
· Special names given to children with clubfoot were similar to those given to all children with disabilities. These can be categorized under the following themes:
o Lame person
o Associated with twins
o Nicknames/Proverbial names
o Abnormal person
o Traditional gods names (i.e. gods who cause condition). Unlike the others, these were ethnic-specific
Recommendations for the project:Detection:
1. Awareness campaigns and education should rely heavily on visual aids such as models, pictures and hands on practical experience. Language is an unreliable tool if used in isolation.
2. Due to the grouping of people with disabilities into similar categories, it is advisable to promote universal health consultation for children born with impairment of body structure or function. Health professionals can then identify children with correctible impairment such as clubfoot, and arrange for support services for all children with disabilities through the Uganda Society for Disabled children.
Adherence:
3. Due to the stigma which is attached to disability, it is advisable to give strong visual messages that children with clubfoot may be returned to full function following treatment.
II: Investigating the local explanatory models or theories of causation:
· Respondents were often not certain about cause but presented a number of theories they felt were likely or probable.
· Layperson beliefs or theories of causation can be categorized into the following themes:
o Hereditary
o Higher Power (God sent, spirits, witchcraft, curses)
o Physical disruptions-fetus related (i.e. big fetus)
o Maternal related causes (i.e. small womb, mal-positioning, poor nutrition, accidents, abuse, drug-use)
o Contraceptive Use; specifically family planning pills.
o Germ theories (polio, malaria, sexually transmitted infections, etc)
o Lack of antenatal care
o Environment, weather conditions and terrain
o Do not know.
· Practitioners generally were aware that the cause of clubfoot is unknown. However, they presented many postulated theories including many of the theories listed above.
Recommendations for the project:Adherence:
1. Practitioners should be trained to identify and acknowledge caregivers explanatory models in order to increase understanding and trust between the parties. The message given to caregivers should be that whatever their beliefs, they can work with the practitioner to achieve the desired result of correction.
III: Outlining appropriate methods of knowledge dissemination in the local cultures
· All categories of respondents mentioned the following themes when asked about knowledge dissemination:
o Media (i.e. radio, TV, newspaper) with radio as the most common response.
o Posters in public places
o Use of local leadership to inform community.
o Informing health practitioners (both biomedical and traditional)
o Broad sensitization and public address.
o Using current health systems (i.e. antenatal, immunization, birth registration with LC)
o Outreach services to the community
o Services closer to home.
Recommendations for the project:Detection:
1. Use the media to the advantage of health services to promote health service awareness about clubfoot and its treatment.
2. Use posters which rely heavily on accurate pictures to promote awareness of the condition and place these in public areas including all health facilities.
3. Utilize the currently available and functioning health services to promote both awareness of the condition and treatment availability i.e. immunization, antenatal services and local council birth registration.
4. Use established community structures, such as the local council leaders to promote awareness among their communities.
Adherence:
1. Use posters in clubfoot clinics and beyond which show individuals with corrected clubfoot actively participating in daily life (i.e. working, driving cars). This visual image may act as a positive reinforcer for adherence.
IV: Identifying current treatment-seeking behaviour or lack thereof and the factors that influence this behaviour
· People use both biomedical and traditional care.
· Medical pluralism exists (i.e. concurrent and sequential use of multiple methods of care)
· Self-treatment through drugs and herbs.
· When seeking care for clubfoot, influences on treatment-seeking can be categorized under the following themes:
o Level of awareness
o Beliefs
o Place of birth, access to transport and distance to health facility.
o Poverty and access to finances
o Challenges of the process
o Social influence
o Responsibilities at home (i.e. other children, harvests, etc.)
o Positive factors (i.e. social encouragement, avoiding stigma, positive care experiences and good treatment outcomes)
Recommendations for project:Detection:
1. Midwives, nurses and health practitioners in all health facilities should be trained to identify and refer child with clubfoot to the regional clubfoot clinics.
2. Traditional healers should be trained to identify and refer children with clubfoot.
3. Put up permanent signs in hospitals directing patients to clubfoot clinic so that when they come to clinic for the first time they are able to locate the service with minimal hassle.
Adherence:
4. For traditional practitioners who are already treating clubfoot, the project should consider closer partnerships with biomedical practitioners.
V: Exploring gender differences in treatment-seeking behaviour and underlying reasons for this difference.
· Gender preference does not appear to significantly impact treatment-seeking for clubfoot.
· Women’s lack of access to finances impedes treatment-seeking.
· There is increasing educational attainment for girls but boys may still be prioritized for education by some.
· There are remaining undercurrents of boy preference.
· Men are heirs to family wealth.
· Teenage pregnancy and early marriage as reasons for preferring boys.
· More attention/protection for girls (i.e. due to weakness, preservation of beauty, etc)
· There is an ideological shift towards equality.
· Tensions exist between the genders.
· Gender roles remain fairly distinct.
· Women’s roles remain primarily in the domestic realm.
· Men are primarily providers.
· Money is a contentious issue between the genders.
· There is clearly positive change and a way forward (i.e. changing roles for women)
· The results of this study do not explain the 5:1 ratio of males to females being reported in some clubfoot clinics in Uganda.
Recommendations for the project:Adherence:
1. Consider providing treating practitioners with additional training on counseling so they can better assist males who may be reluctant to support their wives in care-seeking.
VI: Describing potential barriers to adherence in treatment so that an effective and culturally appropriate approach may be implemented
· Poverty of caregivers
· Lack of paternal support for female caregivers
· Caregiver’s other responsibilities (i.e. conflicts between childcare, harvest, etc. and treatment-seeking)
· Distance to health facilities, and cost of transport for caregivers
· Caregiver’s challenges with the process (i.e. length of treatment, casting, etc)
· Programmatic resource availability and regional imbalances in service delivery.
· Inadequate programmatic resources for follow-up.
· Overcoming the barriers to adherence involved:
o Personal counseling and support from practitioners for caregivers
o Observing positive results in one’s child and having positive interactions with healthcare practitioners.
o Programmatic outreaches and follow-up services.
Recommendations for the project:Adherence:
1. Based on the findings of this study, we felt that the barriers to adherence were sufficiently critical as to require attention in order to ensure the success of the program. Therefore, we suggest:
· Practitioners receive additional training on the barriers to adherence and counseling skills to facilitate adherence. This should include: enquiring about caregivers beliefs, addressing their misconceptions, alleviating fears, and joint problem-solving for over-coming barriers.
· Practitioners should be trained to counsel fathers and involve them in the process of treatment-seeking.
2. In order to further address the issue of adherence, the project planners may want to consider further research examining outcomes when adherence support is provided to caregivers.
Recommendations for the healthcare system:
Many of these issues are systemic issues. We therefore offer the following recommendations to health care planners:
Adherence:
1. There is need to increase efforts to provide adherence support through outreach services and community follow-up. The community-based rehabilitation services should be reviewed as a model of service delivery which can be expanded. This will require increased spending, but when viewed in terms of long-term cost benefit, will be far less expensive than costly surgeries and impeded life courses for children who relapse or remain neglected.
2. Expanded outreach services should involve conducting follow-up early in the bracing phase in order to improve adherence. Outreach practitioners could carry an ‘adherence kit’ with them containing various sizes of braces, cotton wool, pressure wound care, etc to deal with issues right away in the field.
3. Improve current service delivery at clubfoot clinics so that patients are treated consistently and with respect. Put monitoring systems in place to ensure that treatment quality is maintained and corruption minimized.
4. Increase capacity for brace production and/or distribution to prevent running out of stock; and conduct quality control across regions.
5. Consider brace recycling programs to minimize costs and maximize resources.
6. Remove fees for braces or ensure social work involvement to help clients meet the costs. Charging for braces appears to continue to be a problem in most of the regional hospitals and must be addressed to ensure consistency and improve adherence.
7. Ensure resource availability in all hospitals including: plaster of paris, cotton wool, and tools for casting and bracing.
8. Correct regional imbalances in resources availability and strive for consistency. Ensure accountability systems are in place.
9. Increase social work involvement in regional outreach teams to assist with addressing individual client barriers and adherence support. Ensure that they are provided with resources to conduct their jobs effectively; for instance, pool of finances to provide transport support.
Outcomes for all cases treated should be monitored and reasons for failure documented. Results of monitoring should be reviewed regularly so that programs can be adjusted to meet the needs of the population
Introduction:
In Uganda, approximately 1000 infants are born every year with one or two clubfeet and there is estimated to be 10000 children with neglected clubfoot (Pirani, & Naddumba, 2003). According to the human development report, the Ugandan population is increasing at a rate of approximately 3.5% per year, indicating that we can anticipate an increase in the number of babies born with clubfoot (http://hdr.undp.org/).
Typically, in Uganda, the condition is not diagnosed or treated, resulting in significant physical impairment that impedes mobility and has life-long functional implications in this predominantly agricultural society. Children with clubfeet grow up with painful, deformed feet and as a result are severely restricted in their life-courses. Their feet physically impair them, but their environments and society further disable them intellectually, emotionally, economically and socially…